All posts tagged ‘MCDD’

A couple of years before my oldest child was born, the DSM, the Diagnostic and Statistical Manual of Mental Disorders created by the American Psychiatry Association (and used by insurance companies and school systems to mete out services), officially re-evaluated its autism diagnosis, further slicing it into “high” and “low-functioning” subsets.

“High-functioning” children with average to profoundly gifted IQs who used language with relative ease but had difficulties with social interaction and coordination would now be given an Asperger’s Syndrome diagnosis. “Low-functioning” children with significant neuro-cognitive delay and difficulties with using and acquiring language would continue to receive an “autistic” diagnosis. Children who didn’t fit neatly into either of these two camps would be given a “waste basket diagnosis” of Pervasive Developmental Disorder-No Other Symptoms (PDD-NOS).

This last diagnosis was continually criticized because it encompassed such a large range of abilities, deficits, and possible outcomes that it provided little therapeutic guidance on its own. In an effort to give the PDD-NOS diagnosis more value, additional research categories sprang up just as we were looking for answers about our child, and so, instead of receiving an accepted, understood diagnosis, three neurologists (and thousands of dollars we didn’t have) into our search we were told that our oldest son had Multiple Complex Developmental Disorder, a little-known research category that acknowledged our son’s ADHD, nonverbal learning disorder, anxiety, sleep disorder, tic disorder, auditory processing disorder, learning disabilities, sensory integration disorder, and severe gross and fine motor delays, but was not used for billing by insurance, was not understood by my school district, and because of an association with psychosis and schizophrenia (that we have never seen evidence of in our son), proved deeply stigmatizing when communicating with teachers.

Putting a name to an atypically-developing child can establish reasonable expectations and identify best therapeutic interventions. Giving a name to my son’s set of strengths and deficits should have made life better, should have helped us access services, as well as a community of support. But it didn’t. In some ways, the diagnosis we received made things worse. Instead of “autism,” my son’s IEP category has always been “OHI,” or “other health impaired.” This has resulted in longer waits and harder fights with our school district to provide necessary services and therapies — a recurring, increasingly-antagonistic cycle every time we felt his IEP needed refining. Continue Reading “Goodbye Asperger’s?” »